From the start of the Covid-19 pandemic, people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), an illness often triggered by a viral infection (such as Epstein Barr virus), were among the first to raise alarms about the possible implications of post-viral illness following acute infections. As the pandemic progressed, more and more people with Long Covid symptoms began experiencing many of the hallmark symptoms of ME/CFS—including extreme fatigue and post-exertional malaise (PEM)—and many eventually received formal ME/CFS diagnoses (though, given limited understandings and resources, diagnoses often remain difficult to obtain).
Because PEM is defined by increased and often disproportionate symptoms following potentially any physical, social, or mental activity, people with ME/CFS often become experts at pacing, a strategy used to manage one’s energy expenditures so as not to cause a PEM “crash” or “flare.” Unfortunately, many healthcare practitioners do not fully understand PEM, and instead encourage patients to engage Graded Exercise Therapy or other activities to “push through” their symptoms and return to “normal”—tactics which reportedly worsen the symptoms of many people with ME/CFS and Long Covid.
In 2021, the activist group #MEAction released a campaign called “Stop. Rest. Pace.” to share the expertise of people with ME/CFS with people with Long Covid, healthcare providers, and broader publics—through a campaign targeting both social and mainstream media platforms. The campaign includes videos describing these terms and phenomena, #MEAction members sharing their personal experiences, and additional resources for patients and caregivers. It encourages people experiencing Long Covid or ME/CFS symptoms to engage in “radical rest,” to cut activity, and monitor one’s heart rate, as well as to prioritize activities and break them into manageable chunks. #MEAction also ran campaigns targeting news outlets, such as the Los Angeles Times, encouraging them to include this information in their coverage of the pandemic.
Several people with ME/CFS whom I interviewed for the oral history component of this project participated in creating this campaign, or have reported sharing its resources with friends and family, both to caution them against over-exertion when recovering from Covid-19 infections and to better explain their own illnesses. —Harris Kornstein